Well, it was great while it lasted! Jenelle's many weeks of being "seizure free" ended yesterday morning with two massive grand mals, back to back both lasting almost 4 minutes. It was quite a scary situation in that her school "almost" had to call 911. Brett dropped her off yesterday morning at school because I had to be in trial in downtown Los Angeles and was traveling with my boss. He called my cell phone as we were almost in downtown L.A. with the news. My boss immediately suggested I take Metro Link back to Orange County, but fortunately it was not necessary.
Unfortunately, yesterday's seizures occurred at the beginning of her usual joint session with her Occupational Therapist and her Physical Therapist that was being observed by a Therapist from the Tustin Unified School District in order to prepare for her upcoming IEP. After timing the seizures, the school contacted Brett and he instructed them not to call 911 unless she had another seizure. Luckily she did not have another seizure and Brett was able to pick her up from school and take her to daycare. As Brett was traveling to pick up Jenelle at school, I was on the phone with the on-call Neurologist at UCLA getting instructions on whether or not to give her emergency Diastat medication. As per UCLA's instructions, Jenelle's daycare provider gave her the Diastat (even though she was not seizing) so that her seizures would not return or "cluster" as they are prone to do. The school refuses to administer her emergency Diastat so this is why it wasn't given during the second seizure. We have known about the school's policy and had not had an incident at school before yesterday.
At the end of the day, we were lucky because if they had called 911, surely this email would be all about Jenelle being admitted to the hospital for observation (and you know how much Brett and I hate being admitted to that place!) Her therapists handled the situation extremely well, and we are very appreciative. UCLA is concerned, and I'm waiting to hear more from her doctor after sending an update email late last night. Jenelle has not had a grand mal since March of this year, and as always, when "old" seizures reappear, we want to know why. As of last night, Jenelle was back to her usual self; rolling around the house, making sounds, laughing and smiling. She seemed pretty good this morning, and I took her to daycare instead of school just to be on the safe side as her daycare provider is very experienced in how to handle her seizures. So far, no calls from daycare today - so I assume all is well.
I spoke at length with her Occupational Therapist last night and she did tell me some wonderful news. When Brett dropped off Jenelle yesterday morning, her OT put Jenelle in a sitting position. As Brett was leaving, the OT said to Jenelle, "Daddy is leaving, let's wave bye bye", and sure enough, Jenelle looked at Brett and waved in her usual way! What a wonderful achievement for her to demonstrate (especially in front of the District) and it seems she really is aware of her surroundings, and really knows her Daddy!
I know I promised photos with my next update, but obviously I didn't have the time or energy to upload them last night, so you'll have to please wait until the next update. I got a call from the Tustin Unified School District and Jenelle's IEP is tentatively scheduled for September 23 - much sooner than I expected! I called my sister last night (who works in Special Education) and asked if she thought it was a bad thing that the District therapist observed Jenelle like this, and she made me feel better by saying it was probably a good thing because "this is who Jenelle is - seizures and all!" This is true - and it seems Jenelle wants the District to know everything little thing about her - the good and the bad! So today is hopefully "day one" of a new stretch of "seizure free" months ahead. And being the superstitious "Seizure Mom" that I am, know that if you don't hear anything its probably a good thing! ;)
Thanks for the continued prayers - I'll keep you posted.